Social and cultural issues - Nuffield Bioethics

Chapter 3

Social and cultural issues

SOCIAL AND CULTURAL ISSUES

Introduction

3.1 Developing countries are not a homogeneous group. They differ in many ways: culture, history, size of population and rate of growth, gross national product (GNP) per capita and levels of education (especially of girls and women). As discussed in the previous chapter developing countries also vary in terms of the technological and other forms of infrastructure they have in place, in their spectrum of health problems and in the quality and availability of healthcare. There are differences in the degree of social and economic inequality within countries. The degree of freedom of expression, recognition of human rights and extent of social harmony or disharmony are also highly variable. Rapid social and cultural changes are occurring in some developing countries following increased interactions with external cultures and technologies. As a consequence of all of these factors, it is inappropriate to regard developing countries as a single entity and their diversity must to be taken into account when issues arising from research related to healthcare are under consideration. In addition, there are significant variations within developing countries, especially those countries with a number of ethnic groups and significant differences in socio-economic status.

3.2 This chapter discusses the social and cultural contexts in which research in developing countries is conducted, providing a background to the discussion in the following section of the Report. It also highlights issues to which external sponsors and researchers should pay particular attention when research in developing countries is proposed. The interpretation of universal ethical principles in the light of social and cultural contexts is discussed in Chapter 4, while the implications of such contexts for the consent process are discussed in more detail in Chapter 6. While traditional systems of medicine are discussed in this chapter, the purpose of the discussion is to illustrate the contexts within which prospective participants may make decisions, rather than evaluating the effectiveness and evidence base underlying such systems.

Prevalence of alternative medical systems

3.3 One factor that may influence prospective participants in research is their understanding and use of traditional methods of healthcare and medical treatment, as well as the nature and level of their familiarity with evidence-based modern healthcare and research related to healthcare. There are a mix of modern medical and indigenous healthcare facilities in developing countries. For example, in the Middle East, parts of Africa, and South and South-East Asia versions of the Yunani system exist (derived from classical Arabo-Greek Galenic medicine) alongside modern healthcare and folk healing, as do the Ayurvedic system in India and the various Chinese therapeutic systems. This co-existence of different systems is also a feature of developed countries, as people increasingly seek complementary and alternative therapies, in addition to modern healthcare.

3.4 While there is much variation between continents and between regions within continents, local populations sometimes identify modern healthcare as especially valuable for acute conditions (following the successful use of antibiotics for eliminating infections rapidly). In contrast, longterm recurring problems may be ascribed to social, emotional, cosmic or religious causes, for which practitioners of alternative therapies are sought. This sometimes entails patients making choices along established lines: the first visit being to alternative medical practitioners or healers and subsequent ones to modern healthcare practitioners, or vice versa. This is a form of decisionmaking that may be unwelcome to researchers in both host and sponsoring countries. It is, however, a reality that in the long term it is more efficient to address than ignore.

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THE ETHICS OF RESEARCH RELATED TO HEALTHCARE IN DEVELOPING COUNTRIES

BOX 3.1 Combining medical research and traditional healthcare

Ghana

Although there are effective medicines to treat malaria, many children in rural Africa who develop severe malaria die before they can receive help. In some such regions, the severe form of the disease (cerebral malaria which causes convulsions) is thought to be caused by evil spirits. As a result, children who have severe malaria with convulsions are often sent to traditional healers. It is also sometimes believed that such children should not receive injections, although they cannot take medications orally. A new medicine (administered as a rectal suppository) that could treat such cases of malaria is being tested in a district in northern Ghana.1 This is part of a multi-country study sponsored by WHO in Ghana, Nigeria, Tanzania and Bangladesh. The study team in Ghana is working very closely with over 400 traditional healers to identify cases of severe malaria, provide the new medicine, and refer these cases to the nearest health facility for treatment. In all these cases the traditional healers' role is recognised and the credit for the survival of the children jointly acknowledged.2

Burkina Faso

In Burkina Faso a current research programme combines modern healthcare and African traditional medicine in providing treatment for people living with AIDS. Practitioners of modern healthcare are working with traditional health practitioners to assess the effects of traditional healthcare practices on patients. In one example of effective integration of traditional medicine into a modern health system, a team composed of scientists, Health Ministry officials, members of the Burkinabe Association of Traditional Health Practitioners and others, developed a protocol for the management of patients.3

Combining modern healthcare and traditional medicine

3.5 Most healthcare-related research that has been externally sponsored in developing countries has not taken account of traditional medicine. In some circumstances, the belief systems of traditional healers and biomedical researchers may be so incompatible that the two groups will be unwilling or unable to collaborate in research. In other cases such collaboration is desirable, or even essential, for research to be successful. Two such examples involving malaria and HIV/AIDS are set out in Box 3.1.

Concepts of illness, disease, misfortune and death

3.6 In developing countries, sickness may become merged with general ideas of misfortune. For example, one villager may be physically sick, another emotionally distraught or suffering from a mental illness and yet another's herd of livestock may have died. All three may be regarded as suffering from the same generalised affliction, which may be diagnosed by a shaman as someone else's witchcraft or bad spirits.1 The first two villagers' conditions may be treated by modern healthcare practitioners and indigenous herbalists as physical ailments.2

3.7 It is commonplace in Africa for certain ailments, especially those affecting children, to be ascribed to the effects of spirits or violations of prohibitions. Researchers may wish to avoid taking account of such explanations. Yet, these

1

The research is designed to determine the benefit of

early treatment with rectal artesunate capsules.

1

A shaman is someone who is believed to mediate

2

The double-blind randomized clinical trial of

between the spirit world and humanity, and is able to

artesunate rectal capsules on child survival in the

enter into a trance or similar state and then diagnose

Kassena-Nankana district Ghana, is funded by the

and prescribe or effect cures for disease. The term was

UNDP/World Bank/WHO Special Programme for

originally coined by scholars who were studying

Research and Training in Tropical Disease (TDR).

societies in Siberia and central Asia, and was later

3

The Health Minister's meeting `Integrating Traditional

extended to similar religious complexes found

Medicine into Health Systems: the example of

elsewhere in the world.

Burkina Faso' was held in Ouagadougou, Burkina 2

Littlewood R (1988) From vice to madness: the

Faso, from 28 August to 2 September 2000.

semantics of naturalistic and personalistic under-

standings in Trinidad local medicine, Social Science

and Medicine, 27(2) 129?48.

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SOCIAL AND CULTURAL ISSUES

indigenous explanations have a kind of reality as an explanatory system of ill-health and need not be incompatible with the research. Thus, while malaria or diarrhoea are indeed often ascribed to affliction by spirits, they can also be treated as a biomedical condition.

3.8 Local people will usually accept both types of explanation as contributing to an understanding of malaria. Spirits may be invoked to explain recurrent illness (for which the traditional remedy is expulsion of the spirits causing the illness). Bad water or an infestation of mosquito larvae can be understood as explaining the immediate symptoms (with such remedies as the development and use of clean water, chemically protective mosquito nets and medicines, or clearing away undergrowth and stagnant pools around a homestead). Such conflict of ideas and explanations is structural and broadly unavoidable, and should be acknowledged and dealt with by researchers on a day-to-day basis.

3.9 Differences from Western beliefs are sufficiently widespread to affect the views of local participants in research and to influence the conduct and progress of research related to healthcare. Local researchers, even if trained in modern healthcare, are likely to be accustomed to the concepts and practices following from traditional health practices and may view them as useful. Although it is in practice difficult to assess the efficacy of such systems, biomedical researchers may wish, provisionally at least, to keep in mind a distinction between local practices which are beneficial and worth encouraging (such as passing a knife through a flame to sterilise it before cutting a newborn's umbilical cord), and those which are harmful (such as applying animal dung to the stump of the umbilical cord) and should be discouraged.3 The use of other kinds of treatment where there is no evidence base for the assessment of useful or ill-effects may be best left to the judgement of local individuals, families and practitioners, and in some cases may be worthy of research to establish effectiveness.

3.10 Participants' beliefs about common techniques used in research, such as taking blood and urine

samples, or giving injections, will also have an impact on the conduct of research. For example,

sensitivity to the taking of blood samples is widespread in many parts of Africa (see Box 3.2).

Some potential participants in research believe that researchers sell blood. Such individuals may

resent the exercise while others may agree to provide just a very small blood sample. This might

encourage researchers and field assistants to use deceptive methods to obtain larger amounts of

blood if this is required by the study

protocol. Providing urine samples is less BOX 3.2 Blood samples in Malawi

unpopular and where such samples are a

possible alternative to blood samples, may be preferred by study participants. There is often greater reluctance to provide

In Malawi there is a widespread belief that a person's blood contains his or her spirit. If blood is taken in any quantity it is feared that the spirit is also lost. Whoever

samples of faeces. In part this may be takes blood is believed to control the spirit and body

because of the messy procedures for of the individual from whom the blood was taken.

sample collection, especially as water- This belief does not prevent the taking of blood

based sanitary facilities are often not available and the only alternative is a pit latrine. There is, however, also the belief in some areas that faeces may be used for witchcraft. In contrast to reservations about giving samples, in many developing countries injections are very popular.4 If

samples within health facilities when the individual is presumed to be sick. However, population-based studies which require blood samples are extremely difficult or impossible to conduct unless the participants are brought to a healthcare unit. As a result, taking blood samples is minimised in community-based research studies.

3

World Health Organization (1998) Care of the umbilical cord: a review the evidence 1998 - WHO/RHTMSM/

98.4, World Health Organization, Geneva.

4

See Reeler AV (2000) Anthropological perspectives on injections: a review, Bulletin of the World Health Organization,

78(1) 135?43.

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THE ETHICS OF RESEARCH RELATED TO HEALTHCARE IN DEVELOPING COUNTRIES

such belief systems are to be taken into account when research is designed, researchers will require knowledge of, or access to those with knowledge of, the languages and concepts used in discussions and practices of healthcare.

The doctor?patient relationship; the healer?client relationship

3.11 It cannot be assumed that there is only one model of doctor?patient or healer?client relationship. This applies not just across the spectrum of medical systems but also within healthcare systems. An early Western model of the doctor?patient relationship saw it as essentially harmonious and based on the patient's unquestioning acceptance of the doctor's superior status and skills.5 A later model proposed an inherent conflict between doctor and patient deriving from the difference in power between the two, a difference which in some cases has to be negotiated and which may therefore not be harmonious.6

3.12 A similar range of possible doctor?patient relationships is likely to be found in different cultures. One report from Pakistan refers to traditional Muslim healers (called pir) who are regarded as imbued with God's power and so never need to make diagnoses: just seeing the patient will allow them to know the patient's condition and prognosis.7 Reports from Africa suggest much more negotiability between doctor and patient, with the latter entitled to argue with the doctor or healer over the diagnosis and possible cure.8 In between are the more complicated variations, for example in which healers physically identify or empathise with patients, by co-ordinating their pulse rates with those of the patient and then using this common point of identification for diagnosis and cure.9

3.13 Researchers from developed countries may not be fully aware of prospective participants' considerable trust in and respect for medical doctors and other healthcare practitioners, even those with modest qualifications. This may be especially true if the healthcare practitioners have been trained in Western countries. It is questionable whether researchers from developed countries are well prepared for the enormous responsibility that this attitude of respect and trust places upon them. The implications of this attitude for the consent process are discussed in paragraph 6.24.

3.14 In many instances researchers from developed and developing countries may have more in common with their counterparts from other countries than they do with the population under study in rural or less-educated areas. Discussion with interpreters, cultural assistants, indigenous healers and shamans will provide researchers with a means of understanding some of the religious and cultural issues that may have a bearing on research related to healthcare. Such cultural understandings are especially important if the researchers are principally male and the interpreters and cultural assistants are predominantly female. Similarly, gender differences among local practitioners may be significant: for instance, in some societies, traditional herbalists

5

Parsons T (1964) Social structure and personality, Free Press of Glencoe, New York; Collier-Macmillan, London.

6

Hahn RA and Gaines AD (eds) (1985) Physicians of Western medicine: anthropological approaches to theory and

practice, Reidel, Doordrecht. Kleinman AK (ed) (1980) Patients and healers in the context of culture. An exploration

of the border-land between anthropology, medicine and psychiatry, University of California Press, Berkeley.

7

Ewing KP (1984) The Sufi as saint, curer and exorcist in modern Pakistan. In Daniel EV and Pugy JF (eds) Contributions

to Asian Studies, EJ Brill, Leiden, Netherlands.

8

Davis-Roberts C (1981) Kutambuwa ugonjuwa: concepts of illness and transformation among the Tabwa of Zaire, Social

Science and Medicine, 15(3) 309?16.

9

Daniel EV (1991) The pulse as icon in Siddha medicine. In Howes D (ed). The varieties of sensory experience, A

Sourcebook in the Anthropology of the Senses, University of Toronto Press, Toronto. Hsu E (2000) Towards a

science of touch, Part 1: Chinese pulse diagnostics in early modern Europe, Anthropology and Medicine, 7(2) 251?68.

Hsu E (2000) Towards a science of touch, part II: representations of the tactile experience of the seven Chinese pulses

indicating danger of death in early modern Europe, Anthropology and Medicine, 7(3) 319?33.

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